“End of life care is not fundamentally part of our training,” Atul Gawande, MD, MPH, a general and endocrine surgeon at Brigham and Women’s Hospital, said during his keynote address at the National Kidney Foundation’s 2016 Spring Clinical Meetings. Doctors are trained to prolong life, to use every treatment they have in their arsenal to stave off mortality.

But patients have priorities in life besides just living longer, Gawande said, and these goals vary from person to person. “I learned a lot about a lot of things in medical school, and mortality was not one of them.”

During his opening remarks, NKF president Jeffrey S. Berns, MD, professor of medicine at the Hospital of the University of Pennsylvania, discussed honoring patient preferences. “Patients care about quality of life above all else,” Berns said. But too often, health care providers and family members are focused on mortality.

Berns highlighted a study of dialysis patient priorities, published in the American Journal of Kidney Diseases, that ranked outcomes in order of patient priority and found that the 10 top-ranked outcomes were 1) fatigue/energy, 2) survival (defined by patients as resilience and coping), 3) ability to travel, 4) dialysis-free time, 5) impact on family, 6) ability to work, 7) sleep, 8) anxiety/stress, 9) decrease in blood pressure, 10) and lack of appetite/taste. Mortality ranked only 14th and was not regarded as the complement of survival, the authors said. “Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness.”

Aligning treatment with patient goals

Suffering occurs, Gawande said, when the care provided does not align with a patient’s goals. It takes guts for doctors to admit that sometimes what they have to offer will make people worse, he said. What is the most reliable way to find out what your patients’ goals are? Ask them. But this is a conversation nephrologists are often not prepared to have.

“Many dialysis professionals find themselves in the predicament of wanting to provide supportive care, especially symptom management and referral to hospice when appropriate, but feel ill-equipped to do so. Recent research indicates that supportive care needs are going unmet in dialysis and that many professionals are unaware of the tools and resources available that may enable them to provide such care,” Jennifer St. Clair Russell, MSEd, MCHES; Dale Lupu, MPH, PhD; Stephen Seliger, MD, MS; and Alvin H. Moss, MD wrote in NN&I’s May cover story. The authors, members of the Coalition for Supportive Care of Kidney Patients, offer best practices and resources concerning supportive care and shared-decision making for nephrology professionals.

Find more NN&I coverage of the NKF Spring Clinical Meetings

Gawande said there are not enough palliative care physicians to provide care to every terminally ill patient. “Palliative care shouldn’t need to be outsourced,” he said. Rather, every physician should learn how to provide it themselves.

It took Gawande a long time to realize he was lacking in supportive care skills, and that his communication on the matter needed to improve. He learned that he talked too much when discussing the issue with patients. In a conversation about choices, he said, doctors shouldn’t speak more than 50% of the time. He offered examples of the kinds of questions health care providers should be asking seriously ill patients:

  • “What are your goals?”
  • “What are your fears?”
  • “What information do you want from me regarding your prognosis?”
  • “What are you willing and not willing to go through?”
  • “Does your family know your answers to these questions?”

Before 1945, most people died in their homes, Gawande said, because hospitals had little to offer. By 1990, 85% of Americans were dying in institutions. “Our experiment on medicalizing mortality is failing.” But it doesn’t take much to change, he said. The skills of communication are much simpler than other technical and scientific initiatives doctors encounter on a daily basis.

The first step is listening.